Move Into Health

In this section we will address a number of topics and issues that are important to developing and succeeding with a rehabilitation plan for the physical body that is specific for orthostatic conditions.

It has been our experience that there are a number of issues that make for a successful recovery - or success in reaching a level of control that let's a person increase their quality of life and their ability to function with fewer symptoms.

The Major Issues in Moving Into Health

From a practical , 'how do I do this so it works' standpoint, the issues are:
    •  Knowing what to do
    •  Knowing when to do things,
    •  Knowing when to increase or change your routine,
    •  How to adjust a program when injury or illness occur
    •  Getting back on track when you get discouraged or miss days of movement
    •  Having a movement plan that works for a person on bedrest or chair-bound
    •  Creating a maintenance plan
    •  Finding things to do that are fun or you like to do!
    •  Dealing with OI issues - like overheating, imbalanced muscles, nerve pain, other types of muscle/tendon/joint pain.


2 Challenges to Recovery

Just like it is a big challenge to get someone to recognize your symptoms, to get a diagnosis and start a treatment plan, there is still another challenge to recovery and moving into health.

Getting Specifics About What To Do:   Doctors will often tell you - 'you have to exercise' but not tell you what to do or stick with you while you figure it out. They sometimes give motivational speeches; we know, we have lived through them. But the biggest stumbling block is knowing what to do to start and what to do after that. So - one of the next big challenges is to get specifics about 'what' to do.

Physical and Occupational Therapists - can help evaluate where you are at and give suggestions for where to start. They are limited by what insurance will cover - once they teach you the basics and watch how you do for a couple of weeks, they will often let you continue on your own and tell you to 'come back when you need to'.

This works for some. It could be enough for people who have not had OI for long, who have not had periods of prolonged bedrest, or have other medical conditions that affect the muscles, nerves, & joints.

The challenge - or weakness - in this approach is that a person does not always know when they need to go back. It is hard to know how long it should take, whether there is more you should do, whether you are progressing too slow or trying to go to fast, whether the pain you are having is 'normal' for you or whether there is something that can be done about it, etc etc..

Finding a Team for the Long Haul: Recovery can take months and months. It has been our experience that the recovery does not move ahead naturally and smoothly once you get started. (Like a lot of things in life!) If you have been on bedrest for long or have other medical conditions, like hypermobility. It needs to be monitored and re-adjusted.

People need professionals with expertise to help assess things and help keep things moving forward. A person with OI needs to know about what to expect, have someone to bounce around ideas and problems, and to know what is 'normal' and what needs to be checked out because there might be more that can be done to heal.

This could be a physician (or other health professional - like the Nurse Practitioner or Physician Assistant). Unfortunately, not all clinics have a person with this expertise and time.

Other possibilities: a physical trainer or life coach who has expertise in working with chronic conditions, specifically OI, CFS, etc. It takes a different 'mind-set' than the trainer who focuses on preparing athletes for competition or trains healthy bodies.

On-line resources or telemedicine (working with healthcare professionals via the internet or technology) are the next option!

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Topics to be addressed in this section

This a list of the topics that are being developed and resource people we are contacting. Those highlighted are available now.

  • Overview
  • No walking or running!
    • Exercise Research Results
  • Stop 'Exercising' - Get Moving
  • Basics of Getting Moving
    • Starting Out
    • When to increase and how
    • Nutrition to build muscles
    • Fluids & Salt
    • Cooling off
    • Adjusting for Flare-ups and other life events
  • Your recovery plan
    • Including activity in your daily routine
    • Creating & updating a Plan
    • Keeping track of your progress
  • Types of Movement Needed
    • Aerobic
    • Stretching
    • Strengthening
      • Core
      • General
    • Balance
  • Activity options
    • Basics
    • Tai Chi in a Chair
    • Yoga in a Chair
    • QiGong
  • Special Situations
    • Pain - Types & Management
    • Post-Exertional Fatigue & Malaise (PEM)
    • CFS
    • Fibromyalgia
    • Hypermobility & Dislocations
    • Prolonged bedrest
    • Back pain
    • Osteopenia
  • Devices & Machines

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Author: Kay E. Jewell, MD
Page Last Updated: August 28, 2012